Background
Methods
Sample/Study population
Inclusion criteria
Procedures
Analysis
Measures
Results
Characteristics | N (%) |
---|---|
Total # of participants | 27 |
Age (years), mean ± SD (range) | 60.9 ± 8.0 (44-77) |
Race | |
Caucasian | 22 (81.5) |
Asian | 1 (3.7) |
African-American | 4 (14.8) |
Non-Hispanic | 27 (100.0) |
Education | |
Master’s and above | 12 (44.4) |
Bachelor’s and above | 21 (77.8) |
Some college | 27 (100.0) |
Doctorate | 5 (18.5) |
Prior ED | 7 (25.9) |
Effective medications taken before prostate cancer (n = 9) | 6 (66.7) |
Time since | |
Surgery (months) (n = 25), mean ± SD | 23.5 ± 11.7 |
Radiation (months) (n = 5), mean ± SD | 18.2 ± 13.1 |
Surgery | 25 (92.6) |
Robotic | 20 (80.0) |
Open | 5 (20.0) |
Nerve-sparring (vs. partial) (n = 24) | 21 (87.5) |
Hormone treatment | 4 (14.8) |
Surgery followed by radiation | 5 (18.5) |
Erection hardness score (n = 26), mean ± SD | 1.48 ± 1.18 |
Orgasm quality | |
Absent | 2 (7.4) |
Diminished | 15 (55.6) |
Normal | 6 (22.2) |
Better | 3 (11.1) |
Unknown | 1 (3.7) |
Pain with orgasm (n = 25) | 0 (0.0) |
Urine leakage during sex | |
Never | 7 (25.9) |
Occasionally | 14 (51.9) |
Always | 6 (22.2) |
IIEF (n = 16), mean ± SD | |
Erectile function | 16.1 ± 5.8 |
Orgasmic function | 6.6 ± 3.0 |
Sexual desire | 7.3 ± 2.2 |
Intercourse satisfaction | 8.3 ± 3.3 |
Overall satisfaction | 5.5 ± 2.4 |
SEAR, mean ± SD | |
Sexual relationship satisfaction | 49.1 ± 26.3 |
Confidence about self-esteem | 66.2 ± 24.8 |
Overall relationship satisfaction | 76.9 ± 24.4 |
Theme 1: Importance of education/comprehensive information
Man 21: “I was not prepared for what was to follow… I think everybody – all the medical staff starting with nursing and support staff and the doctors themselves, they really need to inform the patient with what’s going to happen after the surgery with complications and side effects and on the surgical end and the physical end, but also then that the effects from the surgery should be talked about from the get go so that patients are not surprised, that they know what’s going to be heading their way and if it’s – give them the full information…And I’m very, very emotionally upset about because if I would have known I think I would have been in a better place through the first year and following that first year if I knew.”
Man 16: “I was fully informed by everybody. All the doctors that were involved fully informed me that these were things that I was up against if they removed my prostate… So definitely – you definitely must keep everybody informed about what’s going on…It’s really-that’s extremely important ”
Theme 2: Frustration with sexual dysfunction
Man 12: “If you have a lack of sensation you don’t have any nocturnal erections. You don’t wake up with an erection and I miss that. I miss it a lot. I miss the sensations of how I used to feel down there, how my body used to feel...I don’t feel whole and I think about it every single day…It’s the first thing I think about in the morning when I wake up and it’s the last thing I think about at night…”
Man 16: “I have not – I do not have any recall of having orgasm like I have now. And honest to God there has to be – I mean sometimes I go into mini convulsions because the orgasm lasts and it’s so strong and lasts for probably two minutes.”
Theme 3: Importance of support and understanding
Man 13: “I’m in a great relationship really for the first time in my life with a woman who really I don’t think doesn’t care what we do as long as we’re together. We enjoy sex a lot not just to be active, just to have intercourse. Without her I don’t think I would be as far along in getting my sex life back to where I want it to be. It’s got to do with her and she’s put up with so much.”
Partner 1: “And I think in the beginning he felt we weren’t there for him, the family, because the family – again, the family does think that the man or father or the husband is strong, is – he doesn’t get sick. He’s there, he has the answer, this is how he is. Go, go, go, I’m here, whatever. And then he gets sick and it’s like, okay, you’re done, you’re fine, you had the surgery, it’s okay. But it wasn’t okay to him, but we felt, no, you’re strong, you’re okay. You’re okay. And that kind of wasn’t good because he felt we didn’t care. And we really didn’t understand him.”
Man 9: “I come here (prostate cancer support group) shaking like a leaf, man. I get in here with a bunch of guys that had been where I was about to go and man they gassed me up with that strength. And like I said, when I came in I was shaking like a leaf. When I left out I was empowered. “
Theme 4: Importance of intimacy
Man 21: “I was fortunate to find this woman and it just enhances every single aspect, whatever, if you’re going to a social event, you’re going on a vacation, you are just being intimate around the house, you’re sharing thoughts and dreams. It just encompasses what life is all about. Some people don’t care about it, but for the men that do it’s devastating.”
Partner 5: “Anything I could tell anybody going through this is like, “If you guys are not intimate, and able to talk with each other now you'd better get that straight before the surgery. Better get it straight because you're gonna need each other, and you're gonna need the intimacy more than you've ever had it…”
Man 15: “I miss the holding of hands. I miss hugging and things like that. I don’t – that’s not sex in the definition of this survey. But that’s what is available to me in my current physical condition…and so yes, it’s important.”
Theme 5: Psychological ramifications of sexual dysfunction
Man 14: “And that made me very depressed. I was really surprised about that because nowhere in our research prior to my surgery did I run across that a whole lot about how one of the side effects mentally would be depression. And even now I still have some issues with depression, but it’s been over a year and a half and I think I’ve adjusted somewhat because I found that to combat depression I need to stay active, find things that I used to enjoy that I still enjoy and not focus so much on the depression aspect because I had a lot to be pleased about.”
Man 12: “The other thing that happened, and again I was not told to expect this, was depression. I had a very serious bout of depression, post op, when I found out the things that were going on with me physically and the time it was taking to get to what I hoped would be healing. I didn’t understand depression. I didn’t know I had it but I suffered with it for several months until I got to the point where I became suicidal.”
Theme 6: Treatment/provider satisfaction/dissatisfaction
Man 17: “Uh, we’re alive, ok? I was Gleason 7. My statistical life expectancy would be about 12 years, you know, that’s average. Could be less, could be more. If I did not get treatment. And, uh, my mentality-- and still is—I got it out, out of my body.”
Man 16: “I mean, this guy gave us an appointment and sat down with us for two full hours in his office…He sent me home and said do this kind of research and to call him if I had additional questions. Well, after I did a little bit of research, I did have additional questions so I called and he called me back. I mean, I couldn’t believe it. I got a call at home from a doctor. And then he spent another 45 minutes after having spent this two, two and a half hours with me – a half hour after ___ (partner) left and then spent another 40 minutes with me on the telephone. I just thought that was awesome.”
Man 1: “I think back. Maybe I shouldn’t have done it (the surgery). And go with the shorter quality of life rather than a long life – a longer life with the situation.”
Partner 1: “Because he would always say, maybe I shouldn’t have done that. And I’m like; you did it, so let’s live on and not live in the past…It got better, yeah. He felt like he was just – didn’t want to live because it was – he didn’t feel like a man. He felt like, oh, God, this is a mess.